The slow work of healing

I just finished reading "Tattoos on the Heart" by Gregory Boyle. I came to it partly via Krista Tippett's conversation with him last summer at the Chautauqua Institute, and partly through other sources. It is a far-ranging account of his work over the last 20 years with the members of toughest Latino gangs in LA through his non-profit Homeboy Industries. The book is suffused with love for these societal outcasts and peppered with wisdom, some in the Christian and some in other traditions, including secular.

What does a book like this have to do with healthcare? Well, a lot. There are many points that might help rehumanize clinical medicine. But this passage on page 179 really made me stop in my tracks:

Funders sometimes say, "We don't fund efforts; we fund outcomes." We all hear this and think how sensible, practical, realistic, hard-nosed, and clear-eyed it is. But maybe Jesus doesn't know why we are nodding so vigorously. Without wanting to, we sometimes allow our preference for the poor to morph into a preference for the well-behaved and the most likely to succeed, even if you get better outcomes when you work with those folks. If success is our engine, we sidestep the difficult and belligerent and eventually abandon "the slow work of God."

Now, I am not Christian or even particularly religious. I am, however, a fan of the Jesus persona who merged with the poor and the hungry and the downtrodden, who became the change he wanted to see. And I had to re-read this paragraph several times, particularly the last sentence. Is this not exactly what we are seeing in medicine? We have told ourselves a lie that by chasing only those outcomes that are quantifiable we are pursuing only that which is important. But wasn't it Einstein who said that not everything that counts can be counted, and not everything that can be counted counts?

Is this gaming of the system that Father Boyle talks about in the paragraph above not exactly what we are seeing as the end-result of the perversion of the idea of evidence-based medicine? What if we change a few of the words in the above paragraph (and stick to secular language)? Will it fit what is happening in medicine today?

Payors Funders sometimes say, "We don't fund efforts; we fund outcomes." We all hear this and think how sensible, practical, realistic, hard-nosed, and clear-eyed it is. But maybe Jesus doesn't know why we are nodding so vigorously. Without wanting to, we sometimes allow our preference to help the sick for the poor to morph into a preference to take care of for the well-behaved and the most likely to succeed, even if you get better outcomes when you work with those folks. If success is our engine, we sidestep the difficult and belligerent and sickest and eventually abandon "the slow work of healing God."

I don't have the answers to how to solve our fiscal and quality crises in medicine. Well, I do, but they involve a cultural overhaul of the entire US of A. But this paragraph sure is making me think.

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The New York Times, aspirin and melanoma, oh my!

One of the reasons my blogging has fallen off lately is because I hate sounding like a broken record. Yet here I am again calling this time the New York Times Well blog on its reporting of, yes, you guessed it, another cancer study.

The story this time is about a paper coming out of the humongous Women's Health Initiative study that examines the relationship between aspirin and melanoma development, hypothesizing that aspirin may help prevent this skin cancer. The paper was published in the journal Cancer and is, of course, behind a paywall. And the abstract, as always, tells me very little.

So I did a little guessing and left this comment on the blog:

So, an absolute risk reduction would have been a much more helpful number to cite, and because the full paper is behind a paywall I cannot get that number. But I can do a little educated estimating:

There were 548 incident melanomas among 59,806 women, amounting to a 0.9% risk of developing this cancer over 12 years. Let's just call it 1%, shall we? Understanding that this 1% is a hybrid of the risk with and the risk without aspirin, the baseline risk must be a little bit higher. Let's give aspirin a huge break and assign the risk without it to the entire group -- let's call it 1.25% over 12 years. Reducing this 1.25% risk by 21% relatively give us roughly 1% risk of melanoma in 12 years in this age group. So, really we are going from 1.25% to 1% risk by using aspirin. This means that 400 women need to take aspirin regularly to avoid 1 case of melanoma (if we believe that this relationship is causal). Mind you, we are not talking about death from melanoma, but just a diagnosis of melanoma. And let's remember that early melanomas are just excised without further treatment. 

Now, among these 400 women daily aspirin can be expected to cause roughly 1 major bleeding event per year. So, over 12 years there would be up to 12 major bleeds. All to save 1 person from a melanoma diagnosis. Why not report the full story?

We'll see if it gets accepted. And by the way the aspirin and bleeding numbers came from a recent large study published in JAMA and covered here at Forbes.

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Healing medicine's moral injuries and spiritual violations

This, from the On Being blog:

Dr. Shay has his own name for the thing the clinical definition of PTSD leaves out. He calls it “moral injury” — and the term is catching on with both the VA and the Department of Defense.

[...] 

“Whether it breaks the bone or not,” he says, “that wound is the uncomplicated — or primary — injury. That doesn’t kill the soldier; what kills him are the complications — infection or hemorrhage.”

Post-traumatic stress disorder, Dr. Shay explains, is the primary injury, the “uncomplicated injury.” Moral injury is the infection; it’s the hemorrhaging.

And a parallel quote from Abe Verghese's The Tennis Partner:

It's important that you realize that every illness, whether a broken bone, or a bad pneumonia, comes with a spiritual violation that parallels the physical ailment.

As I was commenting on the Facebook page of On Being, I started to think about our constant pursuit of precision medicine, which just misleads us into a delusion of certainty, and how far we have drifted from the humanistic goals of medicine -- healing the soul along with the body.

Yesterday I listened to a podcast of Krista Tippett's conversation with Natalie Batalha, an astronomer who discovered the first rock planet outside of our solar system. Dr. Batalha, the ultimate scientist, reminded me that poetry and imagination are essential ingredients of science. She said something like "I am the universe looking at myself through the eyes of this sentient being." This is poetry and spirituality, and every component of this statement is grounded in scientific fact.

The science of medicine needs to regain its soul. It can do this only through the admission of our great uncertainties at the intersection of the "uncomplicated injury" and "moral injury." And even more than admit, we need to embrace and revel in these uncertainties -- this is where poetry and imagination reside. If we fail to do this, we risk compounding this "spiritual violation" instead of easing it. I know this isn't anywhere in the PPACA, and it is not a quality metric that anyone will monitor so as to reward/punish. And it's uncharted territory to boot. Yet this is precisely what is needed to heal medicine.

If you like Healthcare, etc., please consider a donation (button in the right margin) to support development of this content. But just to be clear, it is not tax-deductible, as we do not have a non-profit status. Thank you for your support!